Search found 59 matches

by fuz_mind
Fri Nov 17, 2017 1:24 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 27
Views: 2009

Re: Rate of Ferritin Decline

Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability. Thanks Ann! I just saw my neurologist who saw the improvement af...
by fuz_mind
Tue Nov 14, 2017 12:41 pm
Forum: General Topics: RLS/WED
Topic: random rant about a doctor
Replies: 12
Views: 162

Re: random rant about a doctor

I'll explain that the name was changed because the disease is systemic; it affects more than just legs, it involves imbalances of iron in the brain, the circadian system is out of whack, we have a heightened auditory startle reflex (sudden noises are more likely to make us jump) and slowed blink re...
by fuz_mind
Tue Nov 14, 2017 12:32 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 27
Views: 2009

Re: Rate of Ferritin Decline

Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability. Thanks Ann! I just saw my neurologist who saw the improvement af...
by fuz_mind
Sun Nov 12, 2017 6:07 am
Forum: General Topics: RLS/WED
Topic: Painful RLS
Replies: 11
Views: 168

Re: Painful RLS

as long as pain disrupts sleep, it needs to be dealt with - rls or not!

strangely after my recent IV iron, it's no longer painful, but has transformed into an inability to sit still

Ann: do you think it's worth checking out possibly some minerals that your body might be lacking?
by fuz_mind
Sat Nov 11, 2017 1:46 pm
Forum: Help for Relationships
Topic: exhaustion provides no reserve to deal with stress
Replies: 13
Views: 4306

Re: exhaustion provides no reserve to deal with stress

badnights - what a really good explanatory post on the effects of lack of sleep. This is why 6 years ago I was happy to retire from work - when just a few years previous I could not contemplate the possibility of full time retirement. Betty - how did you get to the point of being ok to retire from ...
by fuz_mind
Sat Nov 11, 2017 12:52 pm
Forum: General Topics: RLS/WED
Topic: random rant about a doctor
Replies: 12
Views: 162

random rant about a doctor

I'm sure all of us have had bad experiences with doctors; bad bedside manners, lack of knowledge etc that we are probably quite numb - or rather I am. Still, I was really momentarily stunned by a doctor who had really poor bedside manners - and subsequently just a great sense of outrage with how she...
by fuz_mind
Sat Nov 11, 2017 12:31 pm
Forum: General Topics: RLS/WED
Topic: Painful RLS
Replies: 11
Views: 168

Re: Painful RLS

I have always had the creepy crawly RLS with a STRONG urge to move - so strong that if you try to avoid it, I swear I move involuntarily. When people talk of painful RLS, I had not idea what that felt like. Maybe I do, now. In the last few weeks, I wake up in the night and my legs feel tight and th...
by fuz_mind
Sat Nov 11, 2017 12:22 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 27
Views: 2009

Re: Rate of Ferritin Decline

Hmmm... by usual measures your iron saturation is low. This indicates that while your ferritin ordinarily would be considered okay, it is likely artificially elevated. Likely that means that your ferritin is definitely on the low side for somebody with RLS. If you haven't had any iron infusions, pe...
by fuz_mind
Sat Nov 11, 2017 12:13 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 27
Views: 2009

Re: Rate of Ferritin Decline

Thank you! I have a lot of hope for managing these symptoms better IF I can get the transfusion. peanut1: did you get your infusion eventually? I hope you did because I had a positive experience with mine when I did it. I am now 3 weeks into my 2nd infusion and I didn't remember having such a drama...
by fuz_mind
Sat Nov 11, 2017 11:55 am
Forum: Prescription Medications
Topic: drug holiday
Replies: 10
Views: 534

Re: drug holiday

Hi all who has so kindly replied to my post :) Just an update I survived the drug holiday and is 3 weeks post IV iron. Drug holiday was awful but I'm glad I did it! Would do it all over again if I have to. It required a lot of determination but it helped to have the tramadol, clonazapam and zopiclon...
by fuz_mind
Wed Sep 13, 2017 5:42 am
Forum: Prescription Medications
Topic: drug holiday
Replies: 10
Views: 534

Re: drug holiday

thanks Beth!
by fuz_mind
Tue Sep 05, 2017 3:43 pm
Forum: Prescription Medications
Topic: Wellbutrin (bupropion)
Replies: 4
Views: 1076

Re: Wellbutrin (bupropion)

my doc who prescribed wellbutrin says it helps with some but not all her rls patients.... but my doc says it helps with pain perception so i guess if your rls is painful, that might help a little

my pain worsened slightly when i cut the wellbutrin dose but no changes in mood. hope this helps
by fuz_mind
Tue Sep 05, 2017 3:39 pm
Forum: Prescription Medications
Topic: drug holiday
Replies: 10
Views: 534

Re: drug holiday

Does your doc at least support the notion of a drug holiday? Point him to the webinar or (if he's like me and can't stand watching things that could be skimmed from text in a tenth of the time) the Foundation brochure on drug holidays. Beth: his idea of supporting me is to cover me with medical lea...
by fuz_mind
Sun Sep 03, 2017 1:55 pm
Forum: Prescription Medications
Topic: drug holiday
Replies: 10
Views: 534

Re: drug holiday

not sure if i am augmented.... neuro doesn't think so. thinks it's natural worsening. Holland: no opiods; have a low dose of lyric, zopiclone and tons of clonzapam and tramadol for standby..... i'm braving myself for the worst.....but Steve is probably right... i should get someone to hide the ropin...
by fuz_mind
Sat Sep 02, 2017 2:31 pm
Forum: Prescription Medications
Topic: drug holiday
Replies: 10
Views: 534

drug holiday

i will be doing a drug holiday from 1mg ropinirole, 2 weeks before a second round of iv iron.

any advice or tips on how to survive the above? or even how the experience is going to be like?


Thanks!

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